AUCD Comments on MCH's proposal to transform the Title V Block Grant

In response to a recent proposal around transforming the Maternal and Child Health block grant, the following comments were submitted to Dr. Michael Lu of MCHB on behalf of AUCD.

Dear Dr. Lu,

On behalf of the Association on University Centers on Disabilities (AUCD), thank you for the opportunity to comment on your proposed changes to the Title V Block Grant. As you know, AUCD members include the 43 Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Programs funded by the Maternal and Child Health Bureau to improve the health of infants, children, and adolescents who have, or are at risk for developing, neurodevelopmental and other related disabilities through exemplary training and service delivery. LENDs have a long history of working closely with Title V programs to enhance systems of care for children with disabilities and special health care needs in their individual states and nationally.

AUCD supports your vision of strengthening Title V's role as the public health system for maternal and child health (MCH) in the states as well as your triple aims of transformation: reducing the burden of the block grant application for states; maintaining flexibility for addressing both state and national needs; and improving accountability of the Title V system for delivering and measuring results.

AUCD appreciates your stated commitment to addressing the needs of children and youth with special health care needs (CYSHCN), particularly given the size of this population and the recognized health disparities for these children. Indeed, addressing the unique needs of CYSHCN is supported in the statutory requirement that 30% of block grant funds be spent on this population. It is not clear that CYSHCN are given sufficient priority in the proposed performance measures, however. As such, AUCD would like to see additional national performance measures that focus specifically on CYSHCN.

We suggest that one additional performance measure for this population should be related to health care transition for youth with special health care needs (YSHCN). Successful health care transition for YSHCN will reduce health disparities for this population; it will also improve outcomes in education, employment, and community living. Transition is receiving a great deal of national attention at this time and public health should be leading the way in the area of health care, particularly with the opportunities for expanded insurance coverage for youth under the Affordable Care Act. Modifying the language of the existing transition performance measure to focus clearly on health care transition for YSHCN could be considered to sharpen this measure.

We appreciate the attention to the early identification of children with developmental disorders in the proposed performance measure related to developmental screening. We would recommend, however, revising or expanding this measure to address timely access to evaluations leading to diagnosis and timely access to evidence-based intervention services for children with identified developmental delays. If we want to improve outcomes for these children, early identification though screening is necessary but not nearly sufficient. Currently, access to timely diagnostic evaluation and evidence-based intervention services are the more pressing public health concerns. Title V is well-positioned to expand upon existing efforts aimed at early identification such as the CDC's "Learn the Signs. Act Early." campaign to move the needle in the areas of evaluation and intervention. While we are not aware of a currently existing data source that meets the criteria you have set forth, perhaps the revisions to the National Survey of Children's Health (NSCH) could address this.

There are a number of additional areas that we believe are priorities for the Title V public health system that we would like to see clearly incorporated within the block grant transformation efforts. While these may not all be appropriate for national performance measures, they could be addressed as some of the structural-process measures that you describe and/or as cross-cutting issues in annual reporting. These include health disparities, cultural and linguistic competency, family-professional partnerships, and workforce capacity including diversity of the MCH workforce. Workforce capacity is of particular interest to AUCD in our support of the LEND programs. As the block grant is transformed to meet 21st century needs, it is critical that the future and practicing MCH workforce possess the knowledge and skills required to make that transformation a reality and be reflective of the diversity of the MCH population.

Lastly, we are supportive of your plans to make revisions to the NSCH in order to collect national data that is also state representative and updated annually. This will be extremely valuable to both Title V and its partners. Our understanding is that while 59 states and jurisdictions receive Title V block grant funds from MCHB, the US territories are not represented in the sampling for the NSCH. This puts these Title V programs at a disadvantage in terms of access to high quality data to support their needs and monitor their progress and accomplishments. We would recommend that the NSCH be fielded in all 59 states and jurisdictions receiving Title V funds in the future.

Thank you for the opportunity to comment and your consideration of our feedback.